We talk about Down syndrome often in passing, but it enjoys a backseat to the wildness of having three kids under 5 years old.

Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.

We live in a bubble. A safe and simple safe-space.

In our day-to-day life, no one seems to care about Down syndrome.

We love Troy; he loves us. It’s that simple.

But children grow, and life gets complicated. Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.

Related Stories

So this Mother’s Day I wish to cherish and immortalize these days.

I wish to remember these days as I fight to have Troy included in school, community, and work. The simple, messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.

TOPICS

JOIN THE CONVERSATION

Fixing the System Against Down Syndrome Prenatal Testing

The proposal last autumn to introduce the non-invasive prenatal test for Down syndrome, known as NIPT, on the UK’s National Health Service from 2018 has sparked a reaction within both the Down syndrome and the medical communities. Creators and many medics hail the test as offering women the chance to know with 99 percent certainty if their baby will be born with the genetic condition, while avoiding the previous invasive test. Reactions to the news have been both positive and negative, but also seem to be largely divided into two main groups: those with medical experience and those with personal experience of Down syndrome.

One of the allegedly major benefits of the NIPT is that mothers to be will know with almost 100 percent accuracy if their baby has Down syndrome, without the risks associated with the current amniocentesis test. Amniocentesis involves taking a sample of the amniotic fluid around the baby, not only is it less accurate, but it also carries a chance of inducing a miscarriage. The creators of NIPT argue that thanks to the availability of the new test, women will no longer have to take this risk. Yet, women were never forced to undergo this test, it has always been optional. However, the high numbers of women opting for it, despite the risk, demonstrates how a one percent chance of losing the baby is worth taking in order to be sure if the baby has Down syndrome.

Leading part of the anti-NIPT campaign is the actor, comedian and mother of a boy with Down syndrome, Sally Phillips (best known as Tilly in BBC’s Miranda). She created the documentary “A World without Down’s syndrome?” which aired on BB2 last year in the hopes of offering people a new stance on Down syndrome and disability in general. The program has been highly praised, particularly by the Down syndrome community. But it has also received some criticism, namely for, “glorifying” disability or evoking guilt from mothers who had already aborted a baby with Down syndrome. One critic said that Philipps’ take on Down syndrome was overly positive and unrepresentative given that her son was “high-functioning.” Yet, why should that be an issue? We should not be determining whether we abort a baby based on their so-called “functioning level.” Once we start deciding who we do and do not want in our society, we begin to enter very difficult territory.

This is also a common issue with people on the autism spectrum, which I myself am on. Many scientists are desperate to find a “cure” for the condition, best referred to as a”‘neurotype,” while many people who are actually on the spectrum — including me — are against this. The common argument against this is that autistic people are “high functioning” and therefore not “in need” of this unfeasible “cure.” Yet, how can we ever decide which disabilities need “curing” and why is our society so obsessed with “curing” or eradicating difference? The voices of people actually affected by these issues are constantly ignored. People with Down syndrome and their families should be consulted on the NIPT test, and, interestingly, they are overwhelmingly against it.

Related Stories

It seems people are all too eager to dismiss campaigners against NIPT once they reveal they have a personal connection to the issue. This may happen now when I say that my aunt, who passed away at the end of last year, also had Down syndrome. Yet why do people perceive our views on this issue to be biased by our own experiences of someone with Down syndrome? If anything, we speak with greater authority on the issue because we know exactly how fulfilling a life with Down syndrome can be, and how much joy they can bring to their relatives. We have witnessed it ourselves first-hand.

The imminent introduction of NIPT on the NHS shows we still take issue with difference in our society, or why would we be so opposed to bringing babies with Down syndrome into the world? We will never be fully accepting of disabled people in our society until we accept the birth of disabled children. As the American disability activist Celeste Adams so aptly quoted in her TED talk, “Don’t fix us, fix the system.”

JOIN THE CONVERSATION

The Future for My Son With Down Syndrome Is Full of Possibilities

A few days after our youngest son was born, he was diagnosed with Down syndrome. I did not handle his diagnosis well. I grieved the life I imagined for him and for us. I went through stages of denial, anger, bargaining, depression and acceptance. Then it felt like “rinse and repeat” through those emotions. It felt like a never ending cycle.

Eventually I asked myself, “Why is it when I imagine the future for my oldest son I look at all the possibilities, yet I don’t do that for my son with Down syndrome? Instead I fear what the future may hold for him? Is there any guarantee my oldest will be a healthy, happy, contributing member of society?” The answer to my last question was, of course not.

I assumed the best when I thought about my oldest’s future and worried and assumed the worst when I thought about my youngest’s future.

Worrying about one and not the other suddenly seemed pointless and unhelpful to me.

Both my children will lead different lives. They will each have different strengths and different challenges.

That one simple tweak to my assumptions broke the cycle I was on. It wasn’t that I stayed in “acceptance” mode. I simply realized there was nothing for me to grieve. The future for my son with Down syndrome is full of possibilities, just like his brother.

TOPICS

JOIN THE CONVERSATION

When My Nonverbal Daughter With Down Syndrome Spoke Her First Sentence

Unexpected. Quick. Brief and succinct. Like wind in mid-summer. My 14-year-old daughter said her first sentence.

I’ve never heard her say “Mom,” “Dad,” or even her own beautiful name.

My 14-year old daughter Tayler has Down syndrome. When she was born, she had to be resuscitated three times. Besides hypothyroidism, sleep difficulties, and hyperinsulemia, she is pretty healthy.

But she is unable to communicate and is considered nonverbal. Sign Language has not been an option for us because it requires fine motor skills she has difficulty with. She does make noises that sometimes get stares, and she has occasionally said “go” and “hey,” but never a full sentence.

Her amazing teachers told me Tayler has been trying to form words, but I wasn’t quite prepared for what happened after Sunday dinner. I just developed a meal of baked chicken coated with an unmentioned dressing. Nothing special. The cooked chicken rested quietly in a metal pan, with a simple salad alongside it. After dinner, my husband let the leftover chicken cool before returning it to its home in the refrigerator.

As I was leaving the room, I heard my husband say, “Tayler, what are you doing with that tray?”

Related Stories

Tayler lightly walked with both hands cupped on either side of the tray. I glanced quickly as she ended her stroll at our garbage can. She tilted the worn metal tray slightly and said, “Throw it away.”

She then handed the tray to my husband and casually walked away. My husband let out a huge, uproarious laugh. I simply stared in disbelief and shock. I never imagined chicken (that honestly wasn’t very great) would produce spontaneous speech.

The thoughts in my head included shock sprinkled with confusion, topped with a slight offense (the chicken wasn’t that bad). I felt complete and utter pride and joy.

She did have a point. This journey as a mom is full of unexpected surprises and turns. But Tayler was correct — I needed to throw some things away. And maybe you should take my daughter’s advice too.

1. Throw away strict timelines.
Even if your child is “neurotypical,” sometimes growth is not linear. I believe change and progress will happen when it is meant to.

My goal was not to wait until the age of 14 for my daughter to say her first sentence. I felt sadness about her inability to speak, but it happened when she was ready. No words can describe the joy I felt when her first sentence flowed from her mouth. It was the realization that if she said one sentence, others would likely come.

2. Throw away self-doubt.
Tayler has had speech therapy for 14 years. But sometimes even when you do everything right, progress isn’t made. I noticed a certain maturity with my daughter this year. I’m unsure why this year in particular, but again progress is not always linear. Sometimes stagnation can look like a mountain. Like Mount Everest. But even mountains can shift.

3. Throw away fear. Fear of disappointment. Fear of bad reports, especially the “no progress” type. The fear of what “might happen” or “what the end will be.” Even though removing fear is tough, I recognize it is unproductive.

I feared for my daughter’s future when she was born. The older I get, the more I realize that the more I plan for her future, even financially, the better off she will be.

I’ll throw away fear, and replace it with action.

4. Throw away hurt and anger. At my daughter’s birth, I felt fear and hurt, and it festered. I felt as if life wasn’t fair. I would see other moms of children with Down syndrome and they were happy. I love Tayler with my entire being, but I was afraid and angry because I felt life might be hard for her. Her multiple hospitalizations and frequent doctor visits created a deep desperation to discover “why.”

Related Stories

I believe having Down syndrome is like a four-leaf clover. It is something that just happens. On the rough days, I’ll do my best to throw away the “Why can’t it be easier?” thoughts and remember that her differences are simply a part of her uniqueness and beauty.

5. Throw away random opinions. The stares sometimes bother me. What will people think if she has a meltdown? What will they say when she reaches out for a hug? What if she kisses them on the cheek? Will they feel weird? I’m throwing that fear of other opinions away.

Because the truth is, her hugs are precious. We have tried our best to teach socially appropriate behavior, but deep in her body exists a desire to hug and show others love, regardless of age, gender, or race.

So if that random stranger chooses to reject it, we shall shake the dust off of our feet and continue our beautiful journey.

I hope other parents will take Tayler’s advice. Even if life has thrown some seemingly insurmountable obstacles and you are faced with unexpected twists and turns, or even if you just made subpar chicken, you might want to take Tayler’s advice and throw a few things away.

After having a developmental surge in October, Anderson seems to have hit a plateau. He is able to walk, but is still working on gaining confidence. We’ve been on-board with the “surge-plateau” roller coaster. But now that he has less than a year before starting public school, everything seems more urgent to me.

When I saw Anderson copying his typically developing friend last week by taking some independent steps, a light bulb went off, lets start this inclusion process now. I went full steam ahead, sending emails, making phone calls and rearranging appointments.

I thought I was ready — more than ready. But when I unbuckled him from his infant car-seat and looked at his smiling, unsuspecting face, the tears started pouring. When I handed Anderson off to his teacher and saw him sitting on the floor, happy and playing with friends, it was a downright waterfall. As I sit here at a Starbucks, childless, I can’t stop crying.

But as torn as I feel right now, it’s not about me. It comes down to this: I’m raising him to leave me, like the rest of my children.

Related Stories

At times, this might look a little different for Anderson than for my other children. I know it means more appointments, and I suspect it will mean extra help and tutoring, and maybe even a firmer push at times. I believe this is one of those times.

I know he’s still a baby. Part of me questions spending time apart from him when this (mostly) sweet phase of life is so short. I may even have people thinking, “Slow down, Momma.” But I am not the kind of mom who slows down. I like to believe God gave me Anderson, in part, because he knew the kind of mom he needed.

So, I won’t let my tears cloud my vision. It’s time to trust my instinct. I’m letting go, because one day I want him to let go of me.

TOPICS

JOIN THE CONVERSATION

The Excitement of Reaching Milestones for My Son With Down Syndrome

Cody is on the move. He’s bear crawling, pulling himself up onto things and moving all over the house. As can be common with Down syndrome, Cody hits his milestones later than a child without the extra chromosome. While other children the same age as Cody are quickly sitting up, crawling, walking, feeding themselves and starting to say words, Cody is not there yet.

When I was researching Down syndrome, other parents said that when your child reaches each of their milestones, it is a new level of excitement. They stressed the word “exciting” emphatically. They said it was a different level of excitement compared to typically developing children accomplishing their milestones. I remember when each of my twins started smiling, sitting, walking, talking. It was fun to watch them change and excel. Their growth happened so fast. They zoomed through each phase. The first 18 months seem quite a blur. I was curious on how different watching Cody’s growth would be. Would the delays be frustrating or would they be as exciting as these parents said they would be?

With a Down syndrome diagnosis, the “professional” focus seems to be on what a child will not do and there is a focus on the “negative.” It’s a good thing other parents of children with Down syndrome gave me this optimistic perspective, because they were right. Watching Cody reach a milestone is a whole different level of excitement. It’s a celebration of pure exhilaration that the whole family participates in. There is cheering and jumping around and shouting and rejoicing.

Related Stories

When you have to wait as you watch your child work so hard at something, you cannot help but be overjoyed when they figure it out. Time may be be all they need, just a little extra time. And as a parent, it gives me the time to savor each phase. And the times when I wondered if my child would accomplish a certain milestone, just like that, he would. Once I saw a few milestones reached, I stopped keeping track of what he wasn’t doing yet. I knew it was going to happen, and I was able to enjoy the ride.

And the slower ride is actually kind of nice, because children grow up way too fast.